We'll Always Have Paris

Sometimes nothing goes right. It’s a natural consequence of being human. But when it happens for weeks on end, it starts to get at you. A number of things happen. For me, personally: sleeping either two or twelve hours a night, getting really angry at people who complain about incorrect Starbucks orders and/or call me Suzanne, Susan, or any other incorrect variation of my name. Watch out world!

Let’s review shall we?

Two months ago my father was diagnosed with adenocarcinoma. His bilirubin levels were too high to start chemotherapy, a stent was placed to allow for proper movement. He flew to Baltimore to get a consult, a plan was made after reviewing options, after a test confirms his levels are low enough to begin chemo, he flew back to Hawaii to meet with an oncologist to start chemotherapy. After a PICC line is placed, he goes into start, except his fever is 102, so it’s a no go. A few more tests and he has confirmed sepsis. That resolves, but then his gallbladder acts up it has to get removed, biopsies are taken that confirm metastasis to his liver. Another date for chemo is set. But he can’t digest food, he’s boated, he keeps throwing up. His stomach isn’t working. A bypass is preformed to skip his duodenum that is obstructed by the tumor. But his stomach still won’t work. He still can’t eat. Nothing works. And he’s in excruciating pain.  After a (seemingly successful) nerve block today, and a colonoscopy, it looks he is just really impacted (google at your own risk). After that resolves with laxatives and enemas, his stomach hopefully starts working again. Eventually. Possibly. 

The handsome Italian Stallion, Dr. Maldini, reminded me today we need to move forward so he can start chemo. That’s the goal. Except I was also reminded today how inherently flawed the conventional treatment for cancer is. We poison the whole body in the process. It kills people just as much as it makes them better. It sucks.

All this really sucks.

So fine. Everything is terrible. I’m depressed and mad. I can’t think straight and all I want to do is lay in bed all day. That’s not great.  But it sure as hell makes me thankful for all the trips I took with my Dad to Sam’s Club to look at cakes as a little girl. All the days we played making forts and sliding down our stairs on giant pillows. I’m glad we worked through my rocky teenage years to get to a place where he could teach me the high points of capitalism and he could hear my passion for fighting human trafficking. I could at last admire him for how smart and what a listener he is. I’m so glad we traveled across the country so much, saw so many beautiful things together. I’m glad he let us cuddle with him so much. He made so much time to be our Dad.

I surprised him in the hallway last week after an x-ray, and in a propofol stupor, he looked at me, stroked my cheek and said “my beautiful girl, the one I prayed for, for nine years”. He really did too. They tried so hard to have babies. And when they finally got them they spent every single day making it evident how much they loved us.

They gave us every beautiful thing they knew: Christ, knowledge, and Glacier National Park.

And then Paris, Rome, and Bratislava, when they got a little more cash.

This is my favorite picture of my parents. They are both drunk. We are in Greece. I love them. 

In conclusion of this extremely long winded note, hang out with people that created you/you created today. Mean it when you say you love them.

Suzanna

Better Pain Management

NG tube did not provide much relief for Rich so out came the tube. After two tough nights of basically not sleeping Dr. Maldini got a pain meds doc to do a consult with Rich. I came in on the beginning of this visit and wow......Rich was very excited. He found someone who really spoke his pain language. So..this is a good thing. His stomach is still distended, he is getting nutrition via iv TPN (looks like clear orange bug juice) and they throw in some lipids for a balanced meal. We need a better nutrition plan for sure. I can't catch doc in his early am visits but can text Rich who relays concerns. This doc is pretty real about keeping things focused. The real goal is chemo. Chemo pts need to eat. Rich needs to eat. Rich has other activities going on. The Lord is presenting him with people to reach out to and pray. He is always willing and ready to do whatever comes his way. Interesting ministry and so personal. I am remembering the words spoken over Rich a few years back with a prophet from Australia was visiting. He told Rich he would have a healing ministry. Rich is active in the prayer ministry at church but this is something far more reaching.

The kids had a pretty good time at the hospital last night. Suz assisted with the shower/shave. He was too tired yesterday afternoon for his daily shower but was very ready by 6 pm. I got to speak to Rich's mom a couple days ago. I will only give her the brightest of the reports. She has enough to deal with being so far away. We have a multitude of people praying, a very smart/ compassionate doc team and nurses. 

Another trip is at hand. Vegas is scheduled from Dec 12-17th. We really want him to go with us. I put off canceling his ticket in hopes of some solutions to the immediate issues. The kids will have so much fun there...so many shows and bright lights. 

Stomach Pain

Rich is having a tough time with this stomach pain. Doc put the nose tube in to help relieve the pain but he only got so much relief. Please pray that they find out what is going on in his stomach. His surgery was over a week ago and it went well. HUMMMMM.....no visitors tonight, he wanted to rest.

Stuck in First Gear

Rich's stomach is not moving...liquids move very slowly through his stomach after a few days. He continues to be bloated and very much in discomfort. Doc does x rays to see what is going on with the digestion process but there is no occlusion or leakage. Doc is adding/changing meds to help the process. I sure hope so. Rich is back to having the iv 'food' TPN. His energy and spirit are strong. He walks all day and some of the night. I am not a good waiter. We need a plan B for this tummy. Kurt is the early visitor, I am the middle, and Andrew and Suz end the day. Seems to be a good play for visitors. 

The tree is almost decorated. We ran out of ornaments so once we fully clothe the tree I will put a pic of it here for you to see. Rich has seen small pictures of this tree. It is so beautiful. He will love it first hand........the smell of pine trees......nothing like it. 

The Lord reminded me of the healing of a little boy..."Heaven is for Real". This kiddo had an appendicitis that wasn't dx properly and wow..the healing process was excruciating to read, can't imagine walking that one out with a little boy (he was almost 4). Rich needs new body parts. We are praying for them all, stomach, liver, gallbladder and pancreas.  Of course we will include new knees as well, why not.

Better day...

Today is a good day. After a shower and a shave Rich seems to perk up and wants to walk. Andrew joined me today at Straub. He was relaxed and he did record Dr. Maldini's talk today. Our good doc is not terribly concerned about Rich's stomach as it is fairly common after this procedure. Rich's stomach is slow to 'wake up' and properly function. His  lower intestines seem to be working fabulously. Enough said. Doc said it may take up to 2 weeks to fully return to normal function. Test results show no blockage and leakage. Good news. We want him home sitting in his chair and putting ice cycles on the tree. Andrew will attack this tree tonight with lights. This should be fun. I am looking forward to this tree decorating. We are finding joy in the simple things......parking spaces, dark chocolate, football games.

Gratitude

I love Thanksgiving. It is my favorite holiday. Family, food, wine, board games, stories, rainy weather. It’s the best. So when my Dad was supposed to come home and didn’t, it threw a serious wrench in the operation. It became increasingly difficult to be thankful.

Dr. Ono (my personal favorite of my Dad’s plethora of doctors), spent a lot of time with us today. Showed us the CT scan, discussed options and details. The tumor is growing and the metastases are spreading. My Dad’s stomach isn’t emptying properly, the muscles that move food through are much less productive than they need to be. So his belly is always really full, which is really uncomfortable, and he hasn’t eaten real food for almost two weeks. His stomach function is being impaired by the cancer. So he needs chemo to shrink the tumor. He can’t start chemo without food. He can’t eat food until his stomach is functioning. This. Sucks. 

All that said, there are always things to be grateful for. There are still things to find joy in. The world is still spinning, babies are still being born. My Dad, despite being in pain, is still positive. My Mom and I have each other to cry and eat ice cream with when we need.

Send him loving text messages, and visit him if you can.

Suz 

We think one more night at Straub

Grandma took the news pretty well. Rich spoke to his sisters and brother and was told that Genevieve did ok with the news. Wow......that is really something to be happy about. Rich is eating his jello and avoiding his mushroom soup but his tummy is rumbling and we hope to be home tomorrow. Suz has bought special foods so that he can enjoy his favorite Thanksgiving foods. I had no idea there was a different butter that comes from grass fed cows. Organic turkey.....that sounds good. Rich is very careful to eat exactly what they give  him. I tried to bribe him with some good potato soup and he would not eat the soup. We snuggled up and watched "To Kill a Mockingbird". It was fun to be close and watch a fav movie. We will see what tomorrow brings..........halleluijah.

Thanksgiving at Straub...

Even though Rich was at Straub yesterday we spent some time with him. Two days prior we had pretty good hopes that he would be home for this wonderful holiday so we planned a 'good dinner'. Rich's tummy is still distended and yesterday he had a light fever. His white blood cell count was up so the doc ordered a ct.  I was there when he started the ct scan 'bug juice'. The ct scan showed an inflammation in his colon. A chest x ray showed inflammation in his chest. He is getting new antibiotics to combat these. The hope is to be home today. It's early now 5:27 am to be precise and we shall see how this day plays out. Suz and I are going to look for the 'tallest' tree we can find in Mililani. Sam will come by with the pickup and bring tall tree home. Christmas trees sell out fast in Hawaii. You have several days to find one then it's artificial only. We have always had a real tree and we do want one up before Rich gets home. He LOVES Christmas trees, especially with ice cycles on them. Our trip to Vegas is Dec 12-17. We want to make this trip for sure! Vegas is so lovely this time of the year ...with the lights.

I want to add that this was Suzanna's first time to put a turkey in the oven, make from scratch oatmeal rolls, make a fresh cranberry salad, prepare the veggies for grilling, make the gravy and mashed potatoes. Andrew and Susanne did most of the clean up and made killer brownies for dessert......who are these people? It was awesome to witness. I am so GRATEFUL. Andrew and Susanne stopped on the way home to see Rich. He is so lonesome there. We go as frequently  as we can but it is not enough. dang it. Kurt has been the faithful friend who daily visits for several hours. Lord, bless this man a hundred fold for his kindness to my husband.

Up in the Air

We are hoping Rich is home for Turkey day but he has a sensitive tummy. Doc checked him over with an  x ray and his pluming is 'Normal'. A distended stomach feels weird and this guy has not eaten in over a week. Ah........Suz is at the hospital now...it would be lovely to have her bring her dad home for turkey (broth) :) Back to work.........it keeps me 'functional'.

Another night at Straub Hospital

Grandma took the news of Rich's illness fairly well. Rich will call her in a few days to see how she is doing. This is a good thing for all of us. We don't want Grandma stressing out over something she can't fix. 
Rich may be home tomorrow. He is eating jello and soups and cream of wheat. Hopefully they will bump up the foods and get him d/c'. Suz is preparing some very special stuffing and mashed potatoes that he can eat and feel good about. Andrew is bringing some friends so that should be fun. Of course the Reyes' will be with us and that is about it. I asked Dr. Kim if she thought we could do the Vegas trip in December. She thought if Rich is feeling strong and eating,,,,,,,sure. Good. I hope we can.

Important Day

Today Rich's sister and brother are going to Seward to tell his mother what's going on with him. Rich was going to tell her last month but had a check about telling her. How sad all this is..and it is one more thing to carry. She will want to see him, of course, but at 92 years, she can not come alone. The family will figure that out. Rich looks very good, very healthy in-spite of this tumor. His eyes are wide open and he is at the 'normal' weight he should be. He is spending hours in the Word and prayer. We are planning a good simple Thanksgiving Dinner. No white foods or sugar. Thanks for prayers today. Please be praying for Genevieve, his mother. What a hard thing to hear of your son.

The Holy Gas

Great news........the Holy Gas started today around 9 am. Doc will move through the food sequence......Rich should be eating organic potatoes at home by Wednesday. Yeah!!! Thank you for your many prayers on this matter. God certainly has a sense of humor. Rich had quite an audience for his 'toot'. He was walking by the nursing station when it squeaked out loud and clear. 

Alive and Well

Six weeks since this craziness started, and it hasn't felt like a day has gone by without tons of news and decisions and tears. Until a couple weeks ago, when everything seemed to explicitly settle down. Less phone calls, letters, and other constant reminders flooded in.

This silence has let things hit in a new way. A focus on the already abundant decisions, a questioning of and searching for Faith, more time to research healing therapies and foods and regimens. Even with this break in constant news, my mind keeps spinning.

I wish I could consciously give it a rest. But I can't. I have to choose to at least meditate on the most joyous things possible, like sweet, sweet love. I've felt it so much through letters and emails and hugs. I feel it especially now that I'm with my family again. A lot of the frustration has disappeared now that I'm where I need to be. I've started to play the guitar and write letters and cook and dance and have long funny talks with my Mom. I can feel my soul start to unravel and breath. And being with my Dad brings peace. He just has a way about him, you feel calm in his presence. You don't want to yell and argue and fight. You just want to watch Lawrence of Arabia and take a nap and talk about all the different kinds of dogs there are. Speaking of my dad, he looks great, is up and walking, hopefully we will get him home tomorrow or Sunday. So lets focus on that today. That he looks like his usual self, minus a tube coming out of his nose. Lets enjoy that he is alive and well this beautiful day, I think thats really all we can do.

I have't been diligent to write, school was unceasingly demanding for a few weeks and my processing and coping took a break. But I just want to take a quick minute to thank everyone who has been there to listen to me cry, hold my hand, buy me a beer, given me a huge hug, took me to the airport, given me a cookie, done extra stuff in a school assignment, or just asked how everything is going. You mean so much to me. I could not be home or sane without you. I love you.

More soon. Xoxoxoxo!
Suz

Looking Good

Suz is home now and I may co erst her to start writing in the blogger. Words can not describe how lovely she is and what an important member of the family she is to us. Rich finally got some real pain management and was in good spirits yesterday. He started walking .......two times and his gait was more balanced and coordinated the second time around. Got  to wake up the body.We try to 'bathe' him once a day with the big wipes and shower cap thingy. Today we are going to do the shave......and put on after shave (Jovan Musk of course),  We are still waiting for the HF (holy fart) and are starting to bet when that will happen. Sheila put her bid in early. Rich's stomach output has dramatically slowed down and is usually very clear. All good stuff. Suz has been checking the stomach and there is lots of rumbling all over the tum tum. Doc said 3-6 days so we are hoping for Saturday.

Suz got a copy of his chart and that will be something she can address. I have comfort with his team of doctors. They are trying to get him strong enough for the first hit of chemo. It's been a frustrating tap dance here and I am seeing the integral part each team member plays. They see him as a person and not a bed assignment. Grateful. We stay as later as we want, laugh loudly and kiss frequently. Another day.

SUCCESS

Yesterday the bypass and port were done with no complications. Dang, it was so good to have something go right. Rich looked good after the sx and was making jokes with cousin Patty. He and Patty go way back and have such admiration for each other's fathers. I'm so glad she is here. After visiting Rich for awhile Andrew, Suz and I took her to Bucca di Bippo for some fine Italian food. Dr. Maldini would have liked the stuff we ordered. It was fun to celebrate this day. God knows what we needed, and we needed for this to happen. Now Rich needs to pass some gas and he can come home. Doc said it would take 3-6 days for this to happen. We are praying for 2 days. Sheila Harris is praying for the 'Holy Fart'. Yes, I say Amen, Amen. Suz got in last night at 5:15. It was difficult for her to see Rich stuck in a hospital bed....but he was in good spirits. Somehow things seem so 'good' again. We are all home, laughing and probably do some crying together soon. Good day!

Plan B

Cousin Patty arrived around 9:30. Got to Straub around 10:30--traffic is always crazy in town. The procedure they wanted to do for Rich-to place a stent into his duodenum to relieve the pressure in his stomach-they were unable to do. There was too much food particles and the proximity of the stent Queen's place was too close. The doc said it was too dangerous for perforation. So later that afternoon Dr. Maldini came in to tell us plan B. Place a bipass from the stomach to the jejunum. (above and below the blockage). Dr. Maldini reemphasized that chemo can not begin until Rich was eating and feeling 'relatively good'. Rich was tired after the procedure but was feeling better later last night. 

Dr. Maldini will do the bipass today if Rich is looking good/strong. Hopefully this can be done today. Rich will need several days to rest before coming home.  Suz arrived in Honolulu at 5:15. Good. 

I think as a family we are just ready to be off this merry-go-round. Of course we can not. Trusting Jesus for the day. Thank you for the prayers going out to our family, especially Rich. One day at a time. 

Non sequitur

People are rangy creatures. On one hand, we can land robots on Mars, juggle bowling pins, invent electron microscopes, dive in front of bullets, and write "Wish You Were Here". On the other hand, we can engineer space shuttles that explode seconds after taking off, train child soldiers, and use voodoo dolls to enact revenge.

Living in America, it's easy to assume that medical proclamations coming from professionals in the field would be roughly identical, so when doctors at Johns Hopkins say "stage IV", I don't expect a veteran surgeon at Straub to lightheartedly question their diagnosis, noting that the tissue on the liver doesn't look to be cancerous. Maybe this is just due to different professionals having different opinions on how much optimism to instill in patients, but it creates a dangerous, floating notion of false hope. I've found that trying to sustain a questionable hope is stressful enough that I've reversed the proverb and have allowed hope to die first. When a biopsy quickly overturned the suggestion that the tumor may not have metastasized, I didn't have to temper any beliefs. What I'm afraid of is that others might cling to hope until the end, when abandoning it will be a much uglier process. 

For now, the healthiest mindset seems to be living life one day at a time, aware of the situation but not getting caught up in predictions of where we'll be several months from now. Unfortunately, I can't help but getting caught up in where we thought we'd be now. Step 1) Get cancer. Step 2) Get chemo. Right? Wrong. The behind-the-scenes theatrics of a body in disrepair, as it turns out, can create a frustrating chain of maladies that keeps chemo therapy one step ahead of us. Yet another assumption I had was that when a sane human was instructed by doctors that certain foods would make his malignant tumor bigger and certain foods could make it smaller, that person's diet would damn well not cross into the tumor-augmenting list. Watching bread crumbs being dumped onto chicken while my dad vows that he's allowed to eat like this irks me in the moment, but later evokes fury and profound depression as I remind myself of the prognosis. But what's causing these surges of negativity is probably not that chemo is elusive or that dad is lying to himself about his adherence to his diet, but that it may not matter either way. Not being able to properly accept why I feel miserable leads to me being so irate at the Steelers' poor performance against the Chiefs that I have to leave the room. A 40+ coworker dropping a "that's what she said" into a conversation will cripple me with vitriolic disgust. I have lost my capacity to fake a laugh at one my bosses' lame jokes.

And I just wrote a thoroughly egocentric entry on a blog that's supposed to be about someone else with cancer. s'good times.

I am not proofreading this.

Thank you.

Andrew

Cousin Patty is coming to town..yeah.

After a bloated weekend Rich went to the ER yesterday morning around 4 am. His tummy wasn't getting better and he wanted to find out why. As I was getting up to go with him, he said he wanted to go by himself. So I met him a few hours later at Straub ER with a 'hose in his nose'. Ah, the CT scan showed that the tumor was blocking his duodenum and so most of the food he has been eating for the past few days was still in his tummy. Now what?? Today at 1:30 they will be performing an EGD. You should see what these initials stand for.......Kurt looked it up, I think it's 26 letters. It is a stent put into the duodenum. The other stent is holding up nicely so lets hope this one does as well. Our nurse asked us about 'advance directives'. We talked about it a long time ago but now is the time to put it on paper.

Sunday night we went to see "Skyfall" with Andrew and his girlfriend Susanne. Rich just wasn't feeling good and was tired of not feeling good. Even 007 could not make the discomfort go away. Cousin Patty comes in today at 9 am. Good.This is one of Rich's favorite cousins who lives in Southern California. She and her brother Jimmy could make a comedy sitcom. Good times with those visits to California. Thanks for coming Patty. I baked you banana bread this morning.......hope you like walnuts and cranberries. Chemo will be put off till next week... once again.

Yet another night at Straub

Today Rich got his gallbladder out! Dr. Maldini was able to do it quickly by  laparoscopic. He also was able to biopsy questionable spots on Rich's liver. Pathology report to follow.Rich is in a lot of pain right now but he should be feeling ok by tomorrow. Doc said he may be home as soon as the late morning. Andrew and I kept vigil tonight. 

Our house looks normal after the tenting. No big piles of termites anywhere. The cat survived in the back yard. We had a lovely evening with Charmaine and her two pups. We shall see what tomorrow brings.
Good night!

Happy '60' Birthday Rich!

It was a small intimate birthday gathering. Aimee had clinicals' and couldn't be there, Diane was not feeling well and Kurt took the pics. Just sushi, banana cake, watermelon and a tort cake. These are some of the people who emotionally take care of us. We are so grateful for all they do....keeping us semi normal. We had a great weekend with Andrew and his girlfriend Susanne. Stan and Carlo were here with functional helps~Stan is doing some carpentry work in the bathroom and Carlo and Andrew attacked the backyard 'green wall'. These trees grow amazing fast and only 18 months ago Carlo trimmed them. To watch them was like watching a Tarzan movie, they moved back and forth on the top branches. Wow. Rich was amazed to see how quickly they moved.

Rich's stomach has not 'been right' for awhile. The surgeon said if things got uncomfortable they would take the gallbladder out. Today will be that day. Rich weighed in at 182. The macrobiotic diet has little to no fat and no red meat so Rich is very lean now. Rich is going in for a doc appt with the surgeon at 10 today. Dr. Muldini will make a decision on what to do with that gallbladder..........yeah. Rich is tired of having food sit in his stomach. 

Suz will be home in a week. I had a lovely idea that we should find the tallest tree for Christmas. We have a 24 foot peak in our house and what fun that would be to fill that space! I think our children could find such a tree. Rich has always loved a big fluffy tree. 

Today we get out house tented. No more bugs for awhile. Goodbye termites!!!